20. Top-Secret Vacation Day Three/Four

The boys, especially J, were super crabby after being out so late at the Magic Kingdom.  So we gave the boys a day off from parks.  They stayed at the hotel and the pool for almost the entire day.  They slept in late (J almost 'til 11am) and just relaxed.  Even swimming all day was less tiring than if they had gone to the parks.

We left the boys at the hotel in the afternoon/evening with my niece so that Stormy and I could go to Epcot and have some adult time.  We ate at a Mexican restaurant, rode some rides, and then headed back to Hollywood Studios once again for our fourth round of Star Tours and second of Tower of Terror.  We love our kids, but it was nice to be able to escape for the evening.  Even at home, we don't get to out on many date nights, so this was so nice for us.  We ended the night eating ice cream (Stormtrooper is obsessed with ice cream) and fell into bed and slept.

Monday we all woke up and went to breakfast and then headed to Universal Studios.  My husband got to geek out at Star Tours and Star Wars weekends, but Universal has the Wizarding World of Harry Potter and that is my thing.  I was so excited.  I loved it.  It was fantastic.  We rode the rides and got some treats from Honeyduke's.  The boys have both read the Harry Potter books and seen the movies, so they were excited about going, too.

J had one meltdown while there, but it was definitely nothing we were upset about.  My niece, husband, and I wanted to ride on the dragon ride, but J doesn't like roller coasters that do the "corkscrew" kind of turns.  And our other boy is just terrified of any rides (which we didn't even know until we went to Disney and he was scared to ride on everything that was on a track).  We weren't going to force either of them to ride something they were scared of, but we still told them they had to wait in line with us.  When we got to the front, I asked one of the employees if there was a place they could stand and wait because they didn't want to ride.  Jokingly, the guy said, "Oh, no, everyone in this line must ride the ride."

J burst into immediate tears and just buried his face right into the middle of my chest.  It took a few moments to get him to calm down, but he did, and he wiped the tears away and waited while we rode on the ride.

We rode water rides and got completely soaked.  The boys seemed to enjoy that.  I was skeptical about J enjoying it because if he gets uncomfortable he will complain for ages, but he seemed to like being wet!  My husband took the boys on some sort of spinning ride that was similar to the tea cups.  Since my husband nearly killed me on Saturday on the tea cups, I sat the ride out and let him torture the boys to sickness on it!

Universal was nice.  We also spent the day with one of my old friends from Starbucks who moved down to Orlando a few years back.  It was great to reconnect with him and his wife - and also get some inside scoop on working for Disney!  We hopped over to the other Universal park so that we could go on the Transformers ride.

I think the boys enjoyed Universal more than Disney because they were much more familiar with the movies and rides.  Some of the rides from Disney were still old-school characters, like Dumbo or Peter Pan, and that is not as relevant to them as Harry Potter, Spiderman, Jurassic Park, or Transformers.  Over all Universal was really amazing and I am so glad I got to see Hogwarts, and I am glad the boys were able to share in that experience.  They got to watch Stormy geek out over Star Wars, and me over Harry Potter.

We drove home on Tuesday, and we got to see Tiny after five nights away from him!  And now on to the rest of our summer!  Which looks like it is going to include a new swimming pool, clay camp for Iron Man, and autism sleep away camp for J.  So much of the summer has already passed and yet we have so much more left to experience!

13. Off the Autism Clock

This week past week was spring break.  The two older kids are with other family members, so it's just been me and Tiny at the house, and Stormy when he's off from work.  First of all, I don't have to wake up at 6a to get anyone ready for school.  That is the most amazing part of this week.  Tiny sleeps until at least 9a, sometimes 10a.  He didn't sleep for almost the first entire year of his life, so he's making up for it now.  

Honestly, it's been a very nice break.  It's given me a chance to relax and only focus on one little person.  It's let me think about the things I want to do, need to do, things that are just out of reach and how I need to grab hold of them.

Whenever I get small breaks from the kids, whether it's an evening or a day, it allows me time to be ME.  Not the me who is a mom or the me who is an advocate, but the ME who is ME.  It's nice to be able to breathe and not always feel as though I'm just trying to catch my breath.

We get breaks like this every so often, but we always have at least one of our babies at home.  Usually the baby, since he's so little still.

It's times like this week, when I get to be calm and laid-back that I gain strength to deal with the chaos that sometimes erupts in our house.  Us parents of special needs kids aren't superheroes.  We're just regular people and these are the kids we have.  We didn't choose them, they were given to us, whether by God or nature, but it wasn't our choice, so sometimes we need a break.  

There was a period of time where I tried to be that superhero, where I tried to implement all the suggestions from the therapist, implement advice from autism articles in books or websites.  I tried to do anything and everything that was supposed to help J.  But I reached a breaking point.  I felt like an emotional mess inside; I was a fraud.  I was trying to keep it together, trying to show how strong I was, how brave, how together, but tiny things made me want to cry.  Or they did make me cry and I couldn't figure out why.

For me, it boiled down to needing help and support and not feeling as though I was getting an adequate amount of either.  I tried to do everything and keep my cool and calm, but sometimes all the stress and emotions overflowed and I had to let it all out.  There is something to be said about allowing yourself to cry.  I remember several months ago when I let it happen.  It was last September and I was in the middle of a painting project in the house, and I had a very limited amount of time to get it finished.  I had thought Stormtrooper was going to tape everything off so I could finish, but it wasn't taped, and I looked around the room and felt this overwhelming pressure build up in my chest, throat, and behind my eyes.  I probably shouldn't have been so upset about blue-tape, but it was the final thing that made me lose it.  I sat down in the room and cried.  I cried for a while, everything came pouring out of me, and the pressure slowly began to dissipate.  Then the tears stop, I picked myself up off the floor, went to the kitchen and drank two large glass of water, and I immediately felt stronger.  I went into the bedroom and painted as much as I could before Tiny woke up from his nap and I had to stop.

That day, the tears were very violent.  I haven't had a breakdown like it since, but I have also used my words to really convey the times when I need extra support.  My husband has also been more giving when it comes to times that I take for myself away from the house, away from the kids, so not only do I get more emotional support at my house, but also more support when I need my time away from the house.  Those times are very important because it's time to relax and not have to be a mom - a normal mom and a special needs mom.

I've wondered if my husband doesn't fully understand what it's like being at home since he works for 10-12 hours a day, but I think it's a learning process for both of us, to find the balance of understanding and support so that neither of us gets overwhelmed in the roles we play in our family.  It has taken time, but he's become an advocate in his own way for both me and J, and also he's become more understanding and supportive.  He's relinquished a lot of the apprehension over what he doesn't understand and has allowed me to take the reigns.  Of course there are times where he disagrees, but overall he has a much more open mind to the therapies we do, and the hardships we face along with the celebrations we make.

I know not everyone is as lucky as we are to have family set in place who will help take care of any of our three babies so we can get a break.  It's still a somewhat rare occurrence, but a blessing nevertheless.  We are also lucky that our ASD diagnosis wasn't severe so that our family is unable to help us out as much as they do.

My favorite times are when the family is all together and happy, but I have enjoyed the time off the Autism clock this past week.  I've gotten to a place where I am not embarrassed to be open about the hard times we've had with ASD.  A lot of my strength has been learnt during times of darkness.  And the ugly truth of ASD is that there are a lot of ugly times, a lot of emotionally overwhelming times.  But as much as the time off has been lovely, I'd rather have my sweet ASD kid home and I'll give him a huge hug when I do finally get to see him!

3. Not-so eloquent intro of why this blog exists

When I was little I always said I wanted three kids. Two boys and a girl. I don't know if that was ever the truth; perhaps I said it because people always like to hear little girls talk about growing up to be mommies, after all that’s what little girls are supposed to want to be. Us girls could be tomboys and play in the dirt with fire trucks, but we were still expected to want to be mothers. I didn’t know if I wanted that. I thought I wanted to get married, but seeing how I wasn’t much bigger than Tiny when my parents divorced, I didn’t really know what married meant. 

As a little kid you don’t see a lot of marriage troubles in movies. A lot of princesses and princes falling in love and getting married, maybe a frog or two, but The End usually pops up around the time the wedding night is to commence. I didn’t know anything about marriage or siblings or babies to even know if I wanted any of it. What I did know was that I hated babysitting and I thought all children were dirty and I swore to god if I had to watch one more slimy boy pick his nose I was never going to babysit again. Thankfully I found a job as a waitress as soon as I was old enough to no longer be considered child labor. 

I was still a waitress when I found out I was pregnant. It wasn’t anywhere close to an ideal situation. Even though I wasn’t ready for a baby, I decided that abortion wasn’t my style. I felt intrinsically pro-choice at the time, but it wasn’t a choice I felt was right for me. I’ve made this statement before, about being very deliberate in my choice to have a baby in less-than-ideal circumstance, and often the response I get is something along the lines of:

That’s because you were meant to be 

J’s’ mother and have a special needs son.

Excuse me, are you on drugs? I’ve heard parents say how grateful they are to have a kid with special needs because they learn so much about themselves and how much they love their little balls of joy weird. But is that completely honest? Or honest at all? I love my son. I love having him around. When he has good days, we celebrate them, and those days bring me tears of joy. But when he has bad days, he has bad days. It’s the bad days that leave me contemplating all of the why’s.

I often don’t understand the why’s. Why can’t he tie his shoes? Why can’t he do his laundry on a day that isn’t Thursday? Why can’t he look us in the eye? Why do we have days where we’re both left utterly frustrated and in tears? Why me? Why him? Why our family? Sometimes life doesn’t seem fair or right or just. At the end of the day I’m often left wondering this overall question of why. Somewhere there’s meaning in all of this and I just have to trust that I will find out what that meaning is.

But these days I feel that we’re getting closer to things getting better. There’s some sort of light flickering in the back of this dark room, slowly growing brighter.  I feel all of us getting happier, even if the road ahead is long and seemingly never-ending.

I’ve wanted to write something about Autism for ages now. I used to write all the time: short stories and fan-fiction. I wanted to start writing something that was deeper for me, therapeutic for me to write, but hopefully therapeutic for others to read. Something that matters. But what matters? 

Well you know what? This matters.

If I’m struggling with these feelings of inadequacy and aloneness and fear then other parents out there must feel these things too. Some days I wake up and experience ALL OF THE FEELINGS that exist in the world just in a few exchanges with my son. The Autism, the hyperactivity, all the WTH moments we have in a single day. And I struggle. And I get angry. And confused. 

But I so rarely read these things. I rarely hear anyone say it. There may be a lot of parents who don't want to hear it, or want to admit it, but here I am, on my soap box ready to shout it to the world what needs to be said for those parents who are losing faith in themselves because they have no one to give their faith to:

BEING THE PARENT OF A SPECIAL NEEDS CHILD CAN BE CRAP, 

BUT THAT DOESN’T MEAN YOU DON’T LOVE YOUR KID, 

DOESN’T MEAN YOU ARE A BAD PARENT, 

DOESN’T MEAN YOU SHOULD GIVE UP.

IT MEANS YOU ARE HUMAN.

WELCOME TO THE CLUB.

2. The Players

In my last post I wrote a short dictionary of acronyms and words we use daily in our house.  None of that means anything if there aren't any characters to apply them to.  Of course, by "characters" I mean my family.  So let's set up the scene and the players.

Stormtrooper

First I will start with Stormtrooper.  That's my husband under there.  He is the moneymaker for our family.  A geek. A good guy.  If he's not looking up or building Star Wars costumes or other cosplay, he is looking up or building something to do with cars.  He is honest ... maybe to a fault, but he makes me laugh.  We dated once and he broke up with me, and then realized his terrible mistake several years later, and now we're married.  No really, though, that's the truth.

J

J is the ASD boy.  He was diagnosed when he was seven, in April 2012.  Now he's nine and in third grade.  He loves to build Legos, but only if he looks at the instructions.  He has no trouble with 3D puzzles and is an amazing artist (so long as he has a picture to look at for reference).  He is beginning to deal with his differences, but isn't ready to admit he's different at all.  He cannot tie his shoes, he cannot sit still, and he is so literal he often doesn't understand jokes.  I once videoed time talking about the times he wakes up in the morning ... he didn't change topic for 3 minutes 54 seconds.  

Little Iron Man

Iron Man is the Middle Child, except he's not.  He's also nine, though technically younger than J, but so far he is neurotypical - meaning he is not on the Autism Spectrum.  Does that mean he's normal?  Ha!  No way.  He loves trains, Legos, and Iron Man - especially Iron Man.  And he loves to sing and dance.  He doesn't understand anything about ASD, and we try our best to treat him and J as equally as possible.  Which is actually impossible somedays.  Ah, but we try.  

Tiny Baby

Tiny is tiny.  He's now a year old, and he wears 9 month clothes (some of which are a little big).  He is loud and such a troublemaker.  He doesn't sleep through the night and sometimes skips his nap, yet he is still the happiest baby around.  He is very proud of himself for walking on his own.  He really likes ceiling fans and anything with wheels.  Also, he is obsessed with Cheerios and jumping in his bed.  This is my husband's favorite picture of him. 

Slytherin Mama

Now me.  If my husband is in love with Star Wars, then I am in love with Harry Potter.  I'd like to say I would be a Ravenclaw because I'm clever or Gryffindor because I'm brave.  I'm certainly not nice enough for Hufflepuff, so I think I'd end up being in Slytherin.  I do have a sense of self-preservation, and I like to succeed.  I work two days a week at a coffee shop and I make cards/invitations/party favors on the side.  Sometimes logos or PDFs.  I never wanted to be anything other than some sort of artist.  I never thought I wanted to be a SAHM.  But I am and I do love it.  Babies are pretty cool, even if sometimes they smell.

So now we enter the scene, where we live our day-to-day lives.  Most if it takes place in a medium-sized town on the outskirts of a larger metropolitan area.  We don't have a shopping mall, but we have every store we could possibly need.  There is a lot of Southern charm down here, where the people send thank-you cards for gifts, and give baked goods in return for favors.  We do say "y'all" and "fixin'" and "bless you" even if you don't sneeze.  And while the charm and the manners and family traditions are nice, it sometimes isn't as forward-thinking and accepting of ASD as I would like.  But I'm beginning to realize that is the world at large, and not just a struggle down here.